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I thought I would share my process in getting treatment for lipoatrophy. I've had gradual lipoatrophy for years but when I went on PIs 3 years ago it significantly accelerated. Lipoatrophy is measured on a 1-5 scale and my face is currently about a 4. I have lipoatrophy uniformly on my body but my face is my primary concern. Fortunately I have not had problems with humps or abdominal fat. For years I've been waiting for some kind of cure for this syndrome but from what I have read MD still don't completely understand what causes lipo much less how to stop it. I know that some people think it is all about the meds but I had lipo before I was even on meds. Most MDs are also of the believe that even if they figure out how to stop lipo from happening once you lose the subcutaneous fat it is gone and will likely not significantly improve on its own. So with no hope of a cure in sight I started investigating cosmetic corrective procedures. The details of these filler are nicely summarized in the AIDSmed.com lessons but I’ll give you my thoughts on what I’ve considered.

The only FDA approved filler in the USA is Sculptra. From reading online it seems people have had mixed results. On the positive side Sculptra appears safe, it gradually fills your face with your own collagen and it's not permanent, so years down the road if something better comes along you are not stuck with it. On the negative side it takes numerous treatments, it's expensive and it doesn't always produce results. I went to a plastic surgeon in Chapel Hill, NC who uses Sculptra only on HIV patients and he said he has had a couple of patients who had no visible results after multiple treatments. My impression is that Sculptra is a good treament if you have mild to moderate facial atrophy but for severe it is too expensive and the results are questionable.

Another filler I looked into was Bio-alcamid. Bio-alcamid is described as a permanent filler even though some, if not all, of it can be removed. The advantage to Bio-alcamid is that large quantities can be used, results are immediate and it doesn’t need to be repeated unless your face changes due to age or further lipoatrophy. The negatives are it’s not approved in the USA, you must go to Mexico, Canada, Italy or Brazil for treatment, and the long term safety is unknown.

Yet another filler is PMMA. PMMA is described in the AIDSmed.com lesson as removable but I’ve not read of anyone actually doing this. PMMA is the filler of choice for Dr. Marcio Serra in Rio de Janeiro and is also used by Clinic’estetica in Tijuana. The negatives and positive of PMMA seem pretty much the same as Bio-alcamid.

PMMA seems to be popular because it is a smaller filler and supposedly gives a smoother appearance. I sent photos of myself to both Dr. Serra and Clinic’estetica. Dr. Serra recommended using all PMMA of different concentrations. Clinic’estetica recommend 4ccs of Bio-alcamid to build up my cheeks and 20ccs PMMA for the rest.

From talking to people by email and telephone who have been treated with these filler it became clear that the experience and expertise of the MD is probably just as important as the filler used. The clinics that appear to have the most experience are Dr. Serra and Clinic’estetica. Dr. Serra told me he has done this procedure 2000 times in 600 patients over 7 years. I can’t find the stats on Clinic’estetica but I remember it as being 1000s of treatments also. Dr. Serra quoted me $700 to treat my face, Clinic’estetica quoted me $4400, (Sculptra, with patient assistance would have been $3000). Both Dr. Serra and Clinic’estetica have been very good in communicating with me and I have heard excellent things about both.

Fortunately the location of the clinic is not a big issue for me. My partner works for an airline and I can fly for free. Considering the cost difference and his qualifications I have decided to go with Dr. Serra. My partner and I are going to fly to Rio the second week of January, have the treatment done and have a vacation for my 40th birthday. I will need to fly down again in February or March for a second, touch up treatment. I am excited about the trip and having the lipoatrophy treated but also worried about the final results and long-term consequences. I don’t expect to look like I used to; I just don’t want to look gaunt and unhealthy anymore.

I’ll keep you all posted on how this turns out. If anyone has any information or suggestions about this please let me know.

FordDate Posted: Monday November 28, 2005 4:34 PMPosted By: Bucko

Ford-

I understand that Scuptura is excellent, and that it can be delivered from the maker at little or no cost to you if you meet the eligibility requirements. You major cost would be the doctor's fee for injecting it. $3000 sound absurdly high. Down here in SoFla it's much more reasonable (under $500.) with the right doc.

My bf went through it and it really makes a difference. I'll be doing it myself soon- probably in January. I'll let you know how it goes-

Peace-Brent(Who has a moderate case of Zerit-cheeks but no humps)Date Posted: Monday November 28, 2005 8:32 PMPosted By: GSOgymrat

Sculptra assistance program will give me up to 12 vials at $100 per vial. The plastic surgeon I saw charges $500 per treatment. He said I would need at least 5 treatments using 2 vials per treatment, at least to start. So at $600-$700 per treatment that is $3000-$3500. I think if you make less than $40K a year you can get the Sculptra for free. Someone with less severe lipoatrophy would not need as much Sculptra or as many treatments.

I hope your treatment goes well. Keep us posted.

Ford

Date Posted: Tuesday November 29, 2005 7:20 AMPosted By: rab

As someone who had severe lipoatrophy, (a 4 on the Carruthers scale {which is how it is measured} of 5, let me tell both of you what a difference doing this can make in your life. We all know that feeling of looking in the mirror at the sunken cheeks, the large divots just under the cheek bones, sunken temples, etc. Or as my partner's mother (who doesn't officially know my status) put it, "you are starting to look like death warmed over". (Ouch!)

Second only to the power of PI's bringing my VL under control, I can say that getting the lipo face taken care of was the most positive thing I've experienced in my 20 + years of living with HIV.

I'm excited for both of you, we'll all love to see some really good before and after pics, if you guys would be willing.

(I agree completely, that the most important decision is the doctor and then they type of filler. . . .in that order.)

RABDate Posted: Tuesday November 29, 2005 8:46 AMPosted By: Bucko

Ford-

My days of earning $40,000 are a dim memory, indeed. I sometimes need help reminding myself that some folks are doing great.

Well the date has been set. January 12 at 6:30 PM I'm going to get PMMA injections with Dr. Serra in Rio de Janeiro. My partner and I are flying down January 9 and returning January 16. I've booked a room at Golden Tulip Hotel in Ipanema. It's suppose to be a superior room with a partial ocean view for $125 a night, which isn't important to me but is to my partner, the hotel snob. After much consideration I've also decided to get my butt done. Frankly, my butt doesn't look that bad, not nearly as bad as my face, but it could use some improvement. I figure if I'm going to travel 4000 miles I may as well do it all. We are flying non-revenue, which means if the flight is booked we don't get on, so my biggest worry, besides have dozens of needles stuck in my face and ass, is getting there.Date Posted: Tuesday December 06, 2005 11:03 PMPosted By: paradise

Good luck with your procedure, i have had the reverse side of the lipo problems, fat accumalation around face and neck and between should blades, i finally had enough saved the money and hap liposuction on all the areas , what a difference, it made the biggest difference, i say go for it do what you can to feel better , Now if i could just learn how to get muscles like you , man that would be great, whats your secret and your diet???

AShDate Posted: Thursday December 15, 2005 2:40 PMPosted By: RIOmate

I have been treated with this filler at Dr Marcio Serra Clinic here in Rio.It was about 2 and half years ago.By that time I was not really sure I should do this facial treatment, but the lipoatrophy was making me feel bad, I looked like I was always tired and also looked older. I was afraid of having dozens of needles stucking my face, and also I had no much information about those procedures and its consequences... but my doctor told me it was safe, so I trust him one more time. It was the same fear I had before starting to be on meds, but now I see it was the best alternative I could choose.I was happy to be informed that this treatment is available now to all brazilian citizens, at the public hospitals ( it is still in big cities only, like Rio and São Paulo, but it is an important step forward, in terms of public health in this country).

I can tell you, I am not 100% like I was before of having lipoatrophy, but it makes really a great difference after using this filler. I hope you have a nice time here in Rio! The only problem you will probably have is that january is high season, I mean it is summer and it is usually very very hot in Rio, so i am afraid you won't be able to go to the beaches...Just let me know if you need any help!Date Posted: Thursday December 15, 2005 6:06 PMPosted By: GSOgymrat

My last vacation was in Las Vegas in the middle of July and it was 110 degrees. That was like a sauna so this time I am expecting a steam room. After 2 1/2 years have you had any problems with the PMMA treatment? Any regrets about having the treatment done? Also, any advice you can give me about want to do, or what to avoid, in Rio?Date Posted: Thursday December 15, 2005 7:39 PMPosted By: RIOmate

It sometimes is like sauna in Rio, because it's normally about 40 degrees Celsius and very humid in summer. But if you are close to the beach it will not be really a problem, there will be always a breeze to turn it cooler to you.

I have no regrets about having the treatment done. I am considering about a touch up treatment with Dr Serra, because by that time I asked him to use as little as necessary of the filler. I was afraid I would suddenly look very different and I did not want people to know that I had done that facial treatment.

I remember I had to stay at home for two days, refreshing my face with ice cubes, my cheeks were like burning sometimes, and I was told not to sunbathe for at least a month. I also could not work out at the gym for some days, what was a problem to me, I like to exercise 4-5 times a week normally.But all this wasn't really a big problem to me. I had the satisfaction of looking myself in the mirror and not having that unhealthy expression on my face anymoreDate Posted: Thursday December 15, 2005 8:04 PMPosted By: RIOmate

You also asked me about what to do and waht to avoid in Rio.Well, usually I would recommend you to go to the beaches like Ipanema and Barra, or to a nice town near Rio called Buzios, which has very clear waters, good for diving lovers. But I am afraid you will have to avoid sunbathing.What is also interesting to see is what we call here carnival rehearseals. Carnival is actually by the end of february, but the samba groups prepare themselves to the parade since december.Well there are a lot of places to recommend too, but for this I would have to know more about what you really like to do. There are a lot of clubs and parties to go, much sightseeing, etc... you can write me a message and let me know what exactly you are looking for, ok?

Ford -you made a good choice, a trip to Dr Serra is well worth the time and expense. You are right, expertise and experience are the key, and he has both, as well as a superior product to anything else i've encountered so far. After dealing with my facial wasting for years, driving to mexico for newfill,collagen, participating in trials at home, etc... i saw improvement but it was always temporary (a few months), the maintenance was getting too expensive and stressful. after 4 years of new-fill topups, my skin was beginning to bruise terribly after injections, i couldnt see doing it much longer. So, Dr Serra entered the picture. I had two sessions with him early last year, the results were more than i had hoped for. Less pain, more result, seems permanent (so far). The product he uses goes deep under the skin and builds up your face from underneath, not just the skin on the outside, so the result looks/feels more natural (not the thick-skinned look newfill creates). His office is small and simple, it's not one of those glamour ipanema celebrity dermo offices...but, relax, you wont be paying the ipanema rent either. the price is incredibly fair, and his expertise and knowledge of dermatology as it relates to hiv is outstanding. i wish he was in LA, let me tell you. after our consult, i felt completely comfortable with him, and my decision. fear of the long needles, the magical mystery brazilian filler-stuff, the thought that i was 4500 miles from home being my own private guineapig, all allayed. after the numbing, it was a peice of cake. i was out having dinner 2 hours later (a little puffy and sore, felt like i'd been boxed around a bit, but not much) then spent a few hours in bed with a dvd and an icepak, the next morning there was almost no sign anything had been done, except that i looked a LOT better. I had a touch of the botox while i was in his chair (hey why not?), i think it cost a hundred bucks to get rid of the railroad tracks on my forehead...again, better-than-good result, Dr Serra goes for "natural" and gets it right. Even back home in LA nobody got it, they just thought i'd had a great vacation and was looking really refreshed. Enjoy Rio, DO go to the beach, just sit under an umbrella to protect your face, they rent them on the beach and Dr Serra said sitting in the shade is ok. Your hotel is right in front of rio's gay beach btw. you will have trouble not noticing this, um, very nice scenery...ps, you can stock up on dermo prescription stuff while you are there, the new generation retin-a, etc, very very cheap, maximize your results. Dr Serra makes good suggestions re this.Good luck!Date Posted: Thursday January 05, 2006 6:49 AMPosted By: GSOgymrat

Dillon-Thanks for the positive report. Initially the thought of flying to Brazil to have my face injected with a substance not approved by the FDA seemed outer limits. But the more I hear the better I feel about having this procedure. Plus I'm just happy to be visiting Rio! My partner and I went through a panic recently because when he "priority mailed" his passport to the Brazilian consulate in Miami it took 10 days just to get there. He is an international flight attendent and can't work without his passport. He had to drop two trips to New Dehli and lost $3400. But everything is now a go.Date Posted: Thursday January 05, 2006 8:36 PMPosted By: Berol

I just ready this thread and I am so glad you are going to get this done. Lipoatrophy is something I have been reading about since day one of being diagnosed...Of course you have to make sure to let us all know how the treatments went, and depending on the recovery if there are any go to a nude beach down there and show off your new ass...Take care and have a safe trip and happy early birthday!

Date Posted: Wednesday January 18, 2006 8:38 PMPosted By: GSOgymrat

I’m back from Rio after having PMMA treatment. What a fantastic trip! Rio completely exceeded my expectations. I’ve document my treatment on this website complete with before and after photos. If anyone has any questions let me know.

FordDate Posted: Thursday January 19, 2006 9:30 AMPosted By: rab

Hi Ford!

I don't know if I should express my happiness or my completely selfish envy? Hmm what to do?

Oh hell, thank you for sharing the pics with us. It was a very generous thing to do, putting yourself out there like that. Congrats on your successful treatment and may I say I love the new avatar.

For those of you who are reading this I would like to strongly discourage you from using the face fillers.Over a year ago, scientist published data from the results of facial biopsies in hiv patients and what they found was that fat cells in the faces of hiv patients are lacking a hormone called Adiponectin. Most people who are suffering from the facial lypoatrophy also have dangerously low HDL (<40) and/or high C-Reactive Protein.

Glaxo Smith Klein (GSK) has published data on Rosiglitazone that seems to indicate that Rosiglitazone can verse lypoatrophy. GSK did a small study in 2004 that demonstrated that lypoatrophy could be prevented in hiv patients who were on HAART. Unfortunately GSK did not take their study to the FDA.Both Rosiglitazone and Pioglitazone are associated with a significant increase in blood serum adiponectin.Both drugs are known as the glitazone class drugs and are used to treat diabetes. The unfortunate part is that no doctor in the coutry will prescribe these drugs to you unless your blood sugar is at least 120.One of the listed side affects of the drugs is congestive heart failure. However, my readings on Medline seems to indicate that the vast majority of patients who experienced this problem already had a heart problem or were taking insulin in combination.

I urge you to avoid cosmetic treatments for lypoatrophy and instead to persue treating the underlying problem. We need activist who are willing to call drug companies and do more trials. I personally suffer from dangerously low hdl cholesterol. My HDL is only 29 and my C-Reactive Protein is 5.1 HDL should be 40 or greater and my C-Reactive Protein should be 2.6 or less. Plain and simply I am a heart attack looking for a place to happen.

There is a drug known as Torcetrapib (synthetic HDL Cholesterol) and this drug has been proven as a monotherapy for siginficantly raising HDL Cholesterol. HDL Cholesterol is considered to be the good type of cholesterol that keeps your arteries clean. Pfizer bought the rights to Torcetrapib after the drug was proven to be a winner. But Unfortunately Pfizer has decided to seek approval of Torcetrapib in combination with Atorvastatin and the net result is that virtually no hiv patient or diabetic can take this drug. Atorvastatin reacts with virtually all of the hiv medications and most diabetics can't tolerate the Atorvastatin. Like all statin drugs, Atorvastatin interfers with CoQ10 and unless you take a lot of CoQ10 with the drug you run the risk of dying of a heart attack.

Pfizer has assured me that they have no intention of allowing any hiv patient into their trials of either Torcetrapib or ETC-216. Our crooked FDA should have never allowed Pfizer to bring in Atorvastatin during a phase III trial, but they did. The FDA has a law that allows a patient to import a 90 day supply of a drug if that drug is not already legal in the US. Since Torcetrapib is only legal if it is coformulated with Atorvastatin, theoretically it should be possible for a patient to bring Torcetrapib into the US under the 90 day rule and as a monotherapy. I have approached a generic pharmaceutical and the Government of Brazil for help with this. I haven't heard back from anyone as of yet. Would anyone like to help me with it?

Lypoatrophy is not merely a problem of sunken faces, flat butts, and extended stomachs, but there are real life threatening things going on in the body with metabolic abnormalities. I strongly discourage any hiv patient from covering up the face. Simply covering up the face with fillers won't help your low HDL, your high C-Reactive Protein. In essence what you are telling society is that no one should know you have a problem. If people don't know you have a problem they are going to be less likely to get involved. People need to see us for what we are.

Earlier today I sent an e-mail to Senator Patty Murray's Office requesting help with the FDA and my application for importing Torcetrapib under the 90 day personal use statue. Apparntly the FDA won't respond to me. In addition, I also asked Senator Murray's office for help in getting the FDA to change its regulations regarding drugs that are approved in this country for different purposes from what a patient plans on using the drugs for. I can't access Pioglitazone or Rosiglitazone because my blood sugar is less than 120.

Lypoatrophy is not incurable and there is no question that the Glitazone Class of drugs may have some problems. Remarkably there is no standardized test for Blood Serum Adiponectin and this is another area that activist could work on. I tried to approach ATAC Drug Development Committee about some of these concerns, but they appear too bothered, too burdeoned and too irritated to become involed. After inviting me to fly to SF at their own expense and meet with Pfizer to discuss these concerns, they changed their mind the day before and threw me out of the conference. I advised them that I would resign since the group doesn't appear to be interested in my concerns. ATAC Drug Development is funded mostly by the Pharmaceutical companies and I suspect this may have influenced the groups motivations -- even if the groups is made up of more than 50% hiv patients.

Well hopes this clarifies a few things about lypoatrophy. If you treat the underlying problems of low blood serum adiponectin, low HDL, and high C-Reactive Protein, you should detect an improvement in your appearance. However, getting access to any medication that will help with these things is tough if not impossible for most hiv patients. I encourage you to avoid any of the face fillers or cosmetic approaches because they don't treat the underlying problem -- they just cover it up. And I am wondering if they might actually interfer with future treatments to improve the underlying metabolic abnormalities?

Do feel free to write me if you would like to see some of the scientific documents on facial biopsies of hiv patients suffering from facial atrophy or if you would like to see some of the latest publications on C-Reactive Protein or findings by GSK on its affect with Rosiglitazone. All of us are at extremely high risk of dying of a heart attack and the medical community isn't doing anything about it. Would anyone like to help me in importing Torcetrapib? I could sure use some help with contacting a generic drug maker overseas. The drug has to be made out of the US in order for us to gain access to it. I will post Senator Murray's followup in a few weeks after I get some answers.

Meaningfull treatments for lypoatrophy will never occur until hiv patients demand real trials to help with the metabolic abnormalities.Date Posted: Saturday January 28, 2006 6:52 PMPosted By: GSOgymrat

I'm fully aware that facial fillers do not treat the underlying metabolic problem that causes lipoatrophy. Facial fillers are cosmetic, which is why insurance companies won't reimburse. Recently I've had great improvement in my cholesterol and trigyclerides by switching my HIV meds. This in theory should also slow my lipoatrophy. However, I've been told by more than one doctor that once the fat cells die, they don't come back. So those of us with severe lipo are not going to see real improvement even if they find a way to correct the metabolic problem.

Could fillers somehow interfere with future treatments? No one can answer that. It is a possibility but I think it's a slim one.

I completely disagree that HIV+ people shouldn't get facial fillers because "people need to see us for what we are." I don't know about other people on this forum but there is a lot more to me than HIV and I have no intention of becoming a walking political statement for stupid microscopic virus. I think looking sick, especially when you feel fine, just to drum up sympathy is asinine. Let's all stop exercising too so we can really look emaciated and pathetic.

I am all for trying to promote research and treatment of lipoatrophy. I wish there was a proven cure for lipo at his time, but there isn't. Facial fillers don't address the underlying metabolic problem and I'm not advocating that people get PMMA or any other filler. However I am very happy with my decision to have PMMA and I'm glad the way I look is more congruent with the way I feel.Date Posted: Thursday February 09, 2006 6:25 PMPosted By: ncrobertc

Ford,

Can you please tell me how you got the info on the Sculptra Patient Assistance Program. I've been searching the net for and can't find anything. I recently saw a doctor in Raleigh that will only charge $350 if I get the Sculptra. He mentioned contacting the maker but that's all the info he gave.

Hi All and I'm new to this board. I'm writing this as I apply ice packs on my face from my first Sculptra treatment this morning. 2 vials this morning, 2 more in 4 weeks time and the last 2 will be 6 weeks after that. And then a 2 vials top-up every 15-18 months from there. Both my GP and my HIV specialist really only recommended Sculptra as there's plenty of experience with it in cosmetic medicine here in Australia. It has been an agonising 12 months debating on whether to get it or not - although I understand that not much will happen after the first treatment, but I can see a glimpse of having my face back - just that is already encouraging.

Sculptra appears to be very safe. I've heard from many people who have been happy with the result and I hope your treatments go well.Date Posted: Monday February 13, 2006 12:51 PMPosted By: BuffaloBill

I wish you luck! I have had scupltra 1 times and it is quite expensive. I believe it is has been somewhat unethical for the company to have jacked-up the prices once it was approved in the USA for HIV-related lipo.

I am interested in learning more about the Bio-alcamid especially for areas such as the butt.

I would be happy to give you any feedback on my Sculptra treatments if you'd like.CHeersDate Posted: Monday February 13, 2006 1:36 PMPosted By: GSOgymrat

Bringing Sculptra to the USA has been a big game. In my opinion Dermik used HIV-related lipoatrophy as an excuse to get Sculptra (Newfill) fast tracked through the FDA and brought to market. To Dermik's credit they are not total bastards because even though they jacked up the price they are basically giving it free to the people who really need it-- people who are HIV+ and have lipoatrophy. They are going to make their money from all the non-lipo customers who want Sculptra for strickly cosmetic purposes. The end result is that HIV+ people get access to Sculptra in the USA faster and at a reduced cost.Date Posted: Thursday February 16, 2006 2:57 PMPosted By: Going Forward

Hi Guys. It's a week now since the first treatment. And 3 weeks before the next one. Believe it or not, I'm already seeing some result. It took a good 2 days for the swelling to completely go down, about 3 days for the reddness to disappear (at least it's summer here so I can blame it on sunburn) and funny enough I also had old skin flake off where the injections were made, giving new looking skinDate Posted: Wednesday February 22, 2006 7:44 PMPosted By: anne1988

I had my first treatment at Clinic estetica in October 2005 and my second in January 2006. My intention was to get bio-alcamid, but I ended up getting PreciseTM, which is PMMA. I am really happy with the results. The first treatment was subtle and people didn't seem to notice, but the second one really did the trick.

The great thing about this stuff is that it is subtle, but at the same time pretty profound. This product removed my gaunt, unhealthy, tired look. As I understand it, PMMA (and bio-alcamid) actually encourage the body to produce collagen. This means that after the treatment your face continues to fill out for several weeks. I had my last treatment the end of January and this past week I have had a considerable number of people mention how good I look - healthy - rested. These compliments are coming from people that don't know I had the treatments. I can't tell you how many years it has been since someone told me I looked good.

This treatment has taken years off my face - or rather, it has given back years. Instead of looking 60, I look like 48 year old should look. I highly recommend it.

Monday, March 13 I'm returning to Rio de Janerio for a second PMMA treatment with Dr. Serra. This treatment will be more of a touch up for my face and another full treatment for my butt. I'm going without my partner this time, which makes me a little nervous because he is fluent in Spanish and understands some Portugeuse where I know zero. At least I know my way around the area and know I can generally get by speaking English. I'll update my website when I return. Wish me luck!Date Posted: Monday March 13, 2006 9:00 AMPosted By: boylikertampa

I have had 5 Sculptra treatments over the past 9 months (1 vial injected on each side of the face equals 1 treatment.) My sixth will be next week, and then my HIV doctor here in Tampa suggested I wait 18 months. I noticed longer-lasting effects after the fifth treatment, and some friends have commented on the facial improvement as well. He had told me initially it could take 6 to 8 treatments over time.

I never considered leaving the country for procedures, based on travel cost, distance from the physician, having surgical stuff done in a foreign country, time off from work, etc. No way I could afford a trip to Rio.

I have paid $400 for each set of 2 treatments to Sculptra thru their Patient Assistance Program, and paid my HIV doctor $350 for each treatment. So, after my 6th treatment next week, I will have spent $3300. My lover has gotten his Sculptra for free, making less than $40000, so his cost has been the $2100 to our physician. No travel costs, and though I have had no ill effects requiring a follow-up, my doctor is a 15-min. drive away.

I am pleased with the results and would recommend it. But it is only for the face.

I'm back from my second PMMA treatment with Dr. Serra in Rio. This treatment was easier than the first. He was able to finish my face and butt. The cost this time was less too: $712. I've updated my lipoatrophy web page

Thanks Ford. I was hoping you would do that. I couldn't find the link when I tried to repost your thread. I'm trying to save some of the threads from extinction once the old forums get zapped forever (in 3 months, I think); then there'd be no way to recreate important exchanges such as these.

Ford, Thanks so much for sharing with the forum members. Your experience is inspirational, and gives us all a little hope for looking better, and, as a result, feeling better about ourselves. I'm looking into getting Sculptra treatments for my face. Just by looking at his pics, my lipo is at about the same level as Ford's is/was. I have the application for entering the Sculptra program, but I'm having trouble finding a practitioner to inject it. I live in the Washington, DC area. Anybody else know of a doctor/doctors who practice in the DC or Balt areas who is licensed for Sculptra, who have/has specific experience in treating men, especially with HIV related lipoatropy?? There are plenty of dermatologists/plastic surgeons in this area, but I want to find one who is sensitive to OUR condition/needs. I can't find any info online about those. Any help/suggestions would be appreciated. Anyone within driving distance would be acceptable. If I fly someplace, i.e. outside the U.S., I'll have to pay for airfare, hotel stays, etc. (don't have any connections w/airline eimployees), so any savings incurred from using a medical facility outside the U.S. would be offset by those costs. I'd also have to pay for return flights to/from for follow up treatments, so I'd really rather find someone in this area, or within reasonable driving distance of here (within 4 or 5 hours, preferably). I've been poz for over 20 years, and am doing well (other than the lipo condition). Thanks, and y'all hang in there.

There are doctors listed on the Sculptra website who have experience using the product. I called doctors in my area that were on the list and inquired how many patients they had treated. When I narrowed it down I scheduled a face-to-face appointment to discuss the details of Sculptra. If you in any way don't feel comfortable with the doctor find another one.

People suffering from sunken faces are usually suffering from low HDL Cholesterol as well. Studies from Australia and France have demonstrated that that Actos (Pioglitazone) can restore lypoatrophy in the face. Actos is an insulin sensitizer and the main effect of the drug is to significantly increase Blood Serum Adiponectin.

I won't criticize people who have chosen the cosmetic route, but I would prefer treatment that restores and regenerates facial fat as opposed to covering it up. Biopsies have been performed on hiv positive patients with sunken faces and what they found was that there was a significant loss of adipocytes in the face.

The syndrome is primarily caused from protease drugs, but the disease can cause some of this problem as well. Sunken faces and low HDL are not the only thing to worry about. A loss of blood serum adiponectin is associated with clogged arteries, peripheral artery disease, mobility problems, and an increased risk of developing some types of cancer. There is a broader study going on nationally and elsewhere to treat peripheral artery disease. Unfortunately Lilly/Takeda and/or the investigators of the studies have decided to ban hiv patients from the study.

I believe that a standardized test needs to be created for Blood Serum Adiponectin and I have asked the FDA postmarketing committee to go after protease makers to list Actos as a treatment for hiv patients suffering from low HDL, high C-Reactive Protein, Sunken faces, etc. The FDA postmarketing committee may be found at <pmcweb@cder.fda.gov> or http://www.accessdata.fda.gov/scripts/cder/pmc/index.cfm

One of the great myths that some hiv patients have is that someone is doing something about their problems. The sad truth about the situation is that someone has to be you/us. I have complained to Lilly and tried to get them to sponsor trials, but they have ignored me. For this reason all of us should be going to the FDA and demanding access to low dos Actos and a standardized test for Pioglitazone. Also another option that should be researched is trying to find another drug company to make an injectable form of Blood Serum Adiponectin or perhaps another delivery vehicle. Rouche Pharmaceuticals might be a possible canidate. They have experience with injectable and seem to be more open to helping hiv patients than many of their contemporaries.

I have been posting some of this stuff in the activist forum on aidsmeds.

I have a new twist on a facial filler procedure, and I have yet to run into anyone who has experienced the same. If anyone reads this and can share a similar story, please let me know about it and what if any follow up you took. I looked into all forms of facial fillers for my servere facial wasting. Sculptra did not seem adequate because my facial wasting was severe. I found a doctor who grafts (injects) fat into your face which he harvests from other parts of your own body. Completely natural and no side effects. Previously I could not find a cosmetic surgeon who would do it because they said the fat would disolve in a few months. This doctor had a different process and his lasted for several years in his other patients. When I had the procedure done I was extremely lean and had no fat donor sites on my body. Other than the Buffalo hump I had developed. And since I was having lypo for that at the same time, the surgeon used the fat removed from the Buffalo Hump to inject in my face. I had good results after the swelling went down on my face. But 2 years later, even though I completely changed all of my HIV drugs, the fat transferred to my face from the Buffalo Hump started to increase and grow. Apparently the fat used from my back, which was affected by HIV drugs and made to grow, had maintained these traits to grow when the fat was put in my face. So now almost 2 years after the procedure I have gone from a wasted face to a large, blown up lookng face. I look like I just had oral surgery, or am on prednisone. My face is full and puffy looking. My eyes look sunken in and my mouth had even become smaller looking from the fat cheeks pushing in towards the mouth. I don't know which look was worse. The wasted one, or the puffy, blown up one. There is also lumpiness on my face too because of the fat growth where it was injected. People notice and make comments all the time. I won't let myself be in any pictures if I can help it. I won't smile, becuase my face becomes even larger and looks chipmonk-like. I look like a different person. Talk about a nightmare. I was worried that something would go wrong with the facial surgery, but never dreamed of anything like this.

PENNGUY really sorry to hear about the after effect that you ran into.. I have talked to my HIV DR. Dermatologist , and Plastic surgeon about possible after effects of treatments ...nonesaid this was a possibility...... I was a cat 5 Lypo patient ( worst level ) very sunken cheeks ,,temples, brow, line and no fat on rest of bod. I was able to join a Sculptra group sponsored by the manufacturer...I have had 5 treatments going for 6th soon so far great results..look at least 10 years less .. I will get official before /after pics at end of trials.......I already know am please with result...why did you reject Sculptra??? Can fat in face be "sucked out" or will it continue to expand??? does anyone have any experience with this response to injections...does DR who did it??

Sorry to hear about your experience. I have never heard of anything like that before. The closest incident I have heard of was from a plastic surgeon I consulted with when I was looking into fillers. He told me of a patient who had fat transferred into his face. For some reason one side of his face took and the other was quickly absorbed, which caused an asymmetry that had to be corrected with Sculptra.

Nick and GSOgymrat,Thanks for your feedback. I contemplated Sculptra but it had just been approved, and in addition I was told that it did not work that good for severe facial wasting. That you could get a hardened look to the skin if the wasting was severe. Also, that it was not permanent. The doctor I went to said he had done it on dozens of guys with HIV related facial wasting. He just never used dorsal fat for the donor site. I do look better than the previous wasted look that made me feel like an Aids poster boy everywhere I went. But now I have a abnormally large look that I feel self conscious about, especially in comparison to my body. I am lean and muscular so it looks even more odd in contrast. I know much of what we go through with our treatments for HIV as well as our treatments for the after affects of the drugs we take are experimental and there are no long term studies. But I feel like the surgeon should have had some sort of foresight that there was the possibility that the fat from the back would take on the same traits when transferred to the face. He does do facial lypo. But so far only to patients having their own original fat lypoed out. Since my face has already been worked on once, I worry about scar tissue causing lumps, distortions and asymmetry. Plus, if the fat takes on the same traits as when it was in the back, even when lypoed out, the fat cells though fewer, might still expand. (I have had lypo twice on the back, and it keeps coming back. At this point he cannot do another lypo. Too much scar tissue to get the candala through. He would have to cut it out. And it could come back yet again.) I feel like the only option might be to find a plastic surgeon who specializes in serious facial surgery, possibly lift the skin, remove as much fat as possible from the face and start from scratch again. Either that or I may have the original surgeon try lypo on the face. And if I get more scar tissue, lumpiness or unevenness, go with either Sculptra to even out the lumps, bumps and divits. Or possible the filler in Tijuana, MX at Cliniqúe Estetica.

Earlier in this post, someone indicated that fat cells don't come back once they die. In addition, the patient who posted this statement said it was his doctor who told him that. And let me guess, his doctor is either a plastic surgeon who specializes in cosmetology or he is friends of someone who makes his living in this area.

Your doctor is wrong and there is substantial data that indicates that face fat can be regenerated, but it takes a long time and it is not without risk. The following article was reposted in Rita Reports and supports the notion that fat cells can be regenerated:

Also, I would like to point out that the Australian hiv lypodystrophy study confirmed this data as well and that Actos (Pioglitazone) has been approved or is near approval in Taiwan for peripheral artery disease.

I think it is a complete abomination that the medical community only offers patients the option of filling up their face with plastic as opposed to regenerating the face.

My question to you is whether or not your doctor and his friends would make the same recommendation if they weren't getting paid for it. I have a sunken face and I am not persuing no plastic fillers. Instead I want things that regrow the face, raise HDL Cholesterol, and reduce C-Reactive protein.

It is a short sighted clinician who doesn't warn his patient of the broader problems caused by lypodystrophy besides the cosmetic component. You might get your face pulled out and looking nice and puffy, but it won't solve the problems of what is going on in your arteries. What is your running pulse when you have run a mile on a treadmill? Is it slowing down after several weeks of exercise? If so, you are probably ok, but the rest of us long term survivors who have been doing years of drugs have narrowing of the arteries and there are treatments for this that also regrow facial fat.

I definitely would love to see a cure for the metabolic problems associated with lipoatrophy. I have had cholesterol problems which are directly related to HIV medications. When I was taking Kaletra/Epivir/Viread my cholestrol labs were a mess and when went I went off meds completely for two months the labs went to normal. I've since changed to Reyataz, Norvir,Truvada and with a statin my cholesterol labs are almost normal. I think certain HIV meds greatly contribute to lipoatrophy and metabolic changes.

The doctor who told me that once fat cells in the face are gone they don't come back was a plastic surgeon. Was he just saying this to promote his business? I have no idea. However I have not heard of anyone who has had severe lipo getting their face back without fillers, even for people I have known who have stopped taking HIV meds altogether.

If there is a treatment out there that is proven to stop lipoatrophy and is safe we all need to know about it. I think medical researchers have been more concerned with keeping PWA alive and are only now looking at complications experienced by long-term survivors.

I just started having high blood pressure (forget the numbers) ever since Thanksgiving and I've been on lots of meds now for 13 years. Also have had lypo now for 6 years. So ZCorker, you think this is all connected? We initially thought it was connected with my going on (at Thanksgiving) Cymbalta so now I'm tapering off on that. I'm taking hydrochlorothiazide and diovan until my numbers improve.

ZCorker, could you link me to some information on the Actos studies that I could take to my doctor?